A Family Activist

he only way to convince a scientist that a man with HIV can safely conceive a child is through rigorous clinical studies published in prestigious medical journals. To non-scientist Larry Madeiros, the glistening, mica-colored eyes of his 1-year-old daughter, Ashley, are proof positive. Or proof negative, as the case may be.

Larry is a 36-year-old hemophiliac from upstate New York. He probably contracted HIV in the late 1970s, when he and an untold number of other hemophiliacs got transfusions of blood clotting factor contaminated with the virus. Hemophiliacs often rely on regular treatments with clotting factor to keep from bleeding to death.

In 1985, Larry got a job waiting tables at a Marriott Hotel in Albany, NY, and set eyes on a waitress named Carol. The manager teamed them up to serve tables. They hit it off like a bug and a light bulb. Carol was still dating her high school sweetheart but Larry buzzed around her so insistently that she eventually warmed to him. (Larry is nothing if not persistent.)

"I did all the work and she got all the tips," Larry teased as they sat on a couch holding hands. "No, I didn't," Carol protested, "I didn't make you carry any trays."

When the couple married in 1989, they both harbored a lingering fear that Larry might have HIV. But, still, he never got tested. They practiced safe sex and went on with their lives. Half a decade later they were living in Boca Raton, FL, and pursuing careers - Larry selling real estate and Carol as a sales rep. In 1995, Larry caught what seemed like a bad cold until it spread into pneumonia and nearly killed him. It was time to test for HIV. "I went to an infectious disease specialist," Larry recalls, "and when he saw my blood test results he turned white. Then he said, what can I do to make you more comfortable?" The doctor expected Larry to die, and fast.

But with new anti-AIDS drugs, Larry got better. He's a short, muscular guy with spiky moussed hair who radiates energy like a static charge. At 36, Carol is thin and small, with a static charge of her own. Rather than truncate their lives because of Larry's illness, the couple started searching for a safe way to have children. They'd heard researchers who use infertility treatments to bypass the virus and called on a local clinic for help.

"At first the doctor said, are you nuts?" Larry said. "Then we sent him some scientific studies and he said, I can do this, it's a piece of cake."

The doctor, who asked that his name not be used, says he took on the Madeiros' case because he'd be helping create one life and preserve another. "You're saving this couple from potential risk of having unprotected intercourse and passing on the virus to the woman," the doctor said. "This is, in fact, potentially life saving to the mother and the child."

Ashley

On May 18, 1998, Carol gave birth to Larry's daughter. The infertility doctor used a combination of sperm washing and in vitro fertilization to help them conceive the child. The couple named her Ashley.

Soon after Ashley's birth, Larry started publicizing their achievement. He had given up real estate to lobby for a home health-care organization, so Larry knew something about stirring up attention to an issue.

He placed an article in a state-wide hemophilia news letter, he called local papers about the story, and he started dialing journalists at national news organizations. Larry sent forth a blizzard of faxes, phone messages, and email. The same persistence Larry used to lure Carol he turned on reporters. Headlines followed, including a front page article in the Washington Post. The couple's story also landed them on televisions programs such as "Oprah," "The CBS Evening News," and "Dateline NBC."

Larry and Carol want couples like them ­ where the man has HIV and the woman does not ­ to know it is possible to have children, in what they are convinced is a safe manner. "With any chronic, potentially terminal disease, if you take away a person's hope then they truly have nothing," Larry said. As for the danger that he will get sick again and die before Ashley grows up, Larry added, "We remember what happened to me in the past, bear it in mind, live for today, and plan for the future all at the same time. Hope for the best but expect nothing."

Other couples with HIV will likely need a lot of hope to keep them going as they search for a doctor to help them. Only a handful of American physicians are willing to hazard the procedure because of the risk of getting sued if something goes wrong. Both the federal Centers for Disease Control and Prevention and the medical groups that oversee reproductive medicine warn doctors against using infertility procedures to help HIV-positive couples get pregnant (the CDC is rethinking the issue in light of recent research). Even the doctor who treated Carol and Larry has stopped accepting HIV-positive couples.

"There is no standard of care for this problem," the doctor said, meaning that whatever technique a physician uses falls outside medically accepted guidelines. "I could get sued even if the baby isn't born HIV positive but there was some other sort of complication along the way. Few people are willing to do this."

But Larry and Carol managed to persuade their doctor to risk it one more time. Carol is pregnant with their second child, which is due in November.